Today Mark came home.  The social worker had arranged for an ambulance to take him home because....well we all know how Mark hates the way I drive and we wanted him home in comfort. Although Mark hasn't been out of bed very much...and has walked less than ten feet at a time....he had the ambulance crew stop at the sidewalk of our home and Mark got off the stretcher, turned and shook the crews' hands and thanked them, and walked into the house and into his room.  Talk about taking control.
   We expected and had many many visitors.  This is part of the reason Mark wanted to come home...to be near his friends.  We had some trepidation about how to do crowd control so as not to wear Mark out...or Don and me as well.  John and Tabitha are especially concerned.  Lisa Tretter told John she would make it a point to contact friends and establish appropriate visiting hours for Mark and the family.  We love Mark's friends and all will have the time they need with him and we appreciate everyone's help.
   Mark is on a morphine pump and it seems to be allowing him adequate comfort.  It will be adjusted as he needs it.  He is also on oxygen.  He is more awake and comfortable than he ever was in the hospital.
   We have received many phone calls.  I was able to take a nap because my beautiful Tabitha took over the phones and cooked a wonderful dinner for Don and me.  It was a very busy, very beautiful day.  Even the Cardinals know Mark is home....they gave him a shout out on TV during the Cardinal game...missed it?.....Mark has it Tivod.
   There have been over 500 hits to Mark's website today....and I hope that everyday everyone continues to check in.  I will post every night how Mark and the rest of us are doing and what any tentative family plans are.
    Thursday, from 1pm to 4 is "cousin time".  Jeff and Mick have asked that this time be saved for them and John and family.  In the morning (after 10 please) until 1 and then after 4 (the cousins have to play Jeopardy together) anyone who would like to stop by and see us.....please do.  I believe Jeff will be night nurse Thursday night, Mandy will be night nurse Friday night, and John and Tabby will have the weekend.  That's as far as we have planned.  
    Thank you everyone for this day.
   

This note is one we hoped never to write.

Mark has battled this cancer for three long years....winning most of the time.  Late last evening, after spending the weekend enjoying visits from people he loves so much, Mark informed me when the visitors were gone that he "had enough".  He wanted no more chemo, no more scans, no more pain.  He wanted to go home.  His family had told him at the beginning of this journey that what ever turn he decided to take.....we were behind him 110%.  So, I called his John and Tabby and asked them to pick up Don...that Mark had something he wanted to tell them.  It was going on 10 or 11.  It was extremely hard for Mark to break this news to all of us...and the details will remain a matter of family privacy.  Only let it be known that we love Mark...and Mark loves us enough to stop the pain.

The doctors were very supportive, and perhaps relieved at Mark's decision.  Dr. Tan, Dr. Denes, Dr. Tran have worked very hard to help Mark control the cancer.  They all fully agreed that Mark's solution is right.  There was fear that the chemo would make him very very sick and Mark wants to spend anytime he has left with his family and the friends he loves so very much.

Mark's biggest disappointment????  He is afraid his family, friends, and co-workers will think that he is a quitter.  We, as a family, reminded Mark that he was a Captain....and he is not quitting...just taking control.  Please remind Mark how proud all of us are of him.  He is the most courageous person I know....in one decision he changed everything and gave not only his family, friends and caretakers a feeling of comfort.   That's Mark...not only controlling the situation...but also paving the way for others to feel, react as well.

Tomorrow, John will be coming to the hospital.  He will accompany Mark in an ambulance to go home.  There, we will circle him with love and care and provide him the peace he has been seeking.

Please feel free to come by to see him after we get him settled in.  We want his friends to be near him, but ask that the visits remain brief to allow Mark and his family to rest.

We are celebrating Mark's life....help us to remind Mark of all the wonderful times he has had with his family, friends.  PLEASE  PLEASE post a note about something about Mark that will give us smiles.  We love him so much.....and he loves all of us and his friends so much that he is wanting this nightmare to end.

     Mark still has the hiccups from time to time and he is still getting the medication to help that.  He is sleeping quite a bit but is aware of who has come to visit him.  He ran a fever during the night and was a little mixed up.  John and Tabby spent a long time with him Sunday night into Monday morning.  Originally I was going to go home, but Mark let me know that he wanted me to stay.  He still has the NG hooked to suction and the xray yesterday morning did not show any improvement in his GI tract.  It is a little after 4am and they just did another film of his belly and also a chest xray.  He is still on oxygen and HATES that tube in his nose.  He told me at one point he didn't understand why he was still in the hospital but seemed to understand that we could do most things at home, but not the suction for his belly.  I know he wants to go home and hopefully he will get better in the next day or two so that we can start thinking about that.  I sleep at short intervals and feel although maybe I don't sleep more than a couple of hours, I am getting enough rest.  Naps are wonderful.  I hope today brings good news and Mark is feeling better.

     Mark had hoped that he would be able to get the NG out today. The NG is a tube that was placed into his nose and into his stomach to keep his stomach emptied, and relieve pressure in his small bowel.  This was put in yesterday and Mark doesn't like the tube at all.  This morning the doctor "tapped" his belly and removed almost a gallon of fluid off his belly.  An xray was done and the doctor said that the ileus was worse than what it was yesterday.....so the tube stays in.
    He is pretty weak but enjoyed visiting with his brother John Gwen and Kelli Houska and Gary and Kris Heyde. He has had a lot of severe hiccups from the NG tube but they finally found a medication that has seemed to have stopped them.  He is also on oxygen now, and is more restful than he was earlier today.  A decision hasn't been made yet about chemotherapy.

  Mark had a fairly quiet night.  He is having a little more pain this morning but the morphine pump and fentanyl patch seem to allow him to have some rest and comfort from time to time.  He enjoyed talking to Kris last night and also talked to his Aunt Jean and a couple of his friends.  Butch was here when the surgeon came in.  Mark knows he will be in the hospital for the weekend and some days beyond.  Still haven't heard when chemo will start but I am hoping it will be soon as the pain seems to be increasing and his belly looks somewhat more distended to me.  Don took some donuts to his jobsite and filled everyone in on what is going on. We tried the healing touch yesterday and I think Mark thought it was more hocus pocus than anything...but he did relax after it.  We will try just about anything.
   A couple of people have asked about visitors and Mark says that he is up to seeing people....so don't hesitate to call or come down. 
    Lisa had a teddy bear and some magazines sent to Mark.  That teddy bear has not left his side since he got it......he feels his friend's hugs from it.
    Feel free to call or come by. My cell phone is 401-1810  I will post again this evening how his day went and any updates.  Thanks for the messages in the guestbook....they are really helpful right now.

  Dr Jenkins was in and explained to us that surgery would be postponed until after another round of chemotherapy.  They want to be sure to give another round a chance to decrease the size of the tumors even more and insure a better surgical outcome.  Mark is feeling a little better now that he has a patient controlled morphine pump.  A little disappointed that surgery has again been delayed but is understanding of same.  He will remain in the hospital through the weekend, hoping that his GI tract wakes up.  Not sure...but from the conversation this morning we think chemo will be Monday or Tuesday.  Will keep everyone posted.

     Haven't posted anything since we first came in here because we really didn't have any answers to what has been going on.  What we do know is that Mark's tumors are active again, and that he has an "ileus" which is a paralysis of sorts of the GI tract.  This is why he has been so nauseated and why he is having such severe abdominal pain.
     Described as a "progression" of the tumors, Mark's discomfort this time around is related to  the disease and not the chemo.  He has not been on chemo for a month now and it is frustrating that in that short time the tumors started growing again.
     The plan at this time is unknown.  It is doubtful that he will be able to have surgery because of the tumor activity and lack of GI function but we are awaiting the surgery team to see Mark and make that decision.  Dr. Tan stated he believes that Mark will need more chemo probably starting Monday...but that determination still needs to be made as well.  Dr. Tan asked Mark what his expectations were....Mark didn't understand what he wanted him to say and neither did Don or I.  We just want Mark well.  It is very hard to see him in pain and we are grateful that they placed a Fentanyl patch on him and have increased his morphine.  At least he is comfortable until the decision is made what to do next.
     We are in room 7925...they moved us to Mark's regular floor yesterday and it is helpful seeing the familiar nurses that we know take such an interest and care for Mark so well.  We have asked for the healing touch people to come see Mark and see if this therapy helps make him more comfortable.
     Don took off work today and probably will tomorrow.  He and Mark are watching the Cardinal game together.  John is feeling better from his surgery yesterday and is going to try and come up and spend some time with Mark this evening or tomorrow.
     As soon as a decision is made on the course of action....I will post it.  Otherwise, feel free to call me on my cell phone.

     Mark agreed this morning that one more night feeling miserable was enough.  Kris called me right on time and I was able to coordinate with the home health nurse and the doctor's office to arrange to bring Mark into the emergency room.  They seemed really ready for us and within no time had blood tests, ekg, ultrasound of the belly, xrays done. The ER doc was super and told me immediately he had no plan other than to have Mark admitted and get him feeling better.  He also felt that Mark needed another CT scan to check to see if Mark had an obstruction.
     We (Don and I) were concerned about Mark's blood work and if his counts would be affected by the Sutent.  His counts were wonderful.  We were not sure if they would be admitting Mark to the surgical service or the oncology service.  He got a real nice private room on the oncology floor.  Just recently the resident came in and told us that the CT scan showed no obstruction but there were some new nodules noted on the peritoneum...the lining of the belly.  We are not sure if this means surgery will be postponed and another round of chemo is up next or what...we will discuss with Dr. Tan in the morning.  We are very relieved as his surgeon is out of town and we were worried that he may need emergency surgery.  The nodules are a little concern....but we will get them with either surgery on Tuesday or more chemo.  Just have to wait and see what Dr. Tan says tomorrow.
     Our John has his own medical plan for tomorrow and it is not pleasant having both of your sons not feel well on the same day.  I worry about John but he has the best girl in the world to watch out for him tomorrow...I would certainly only be in the way.
     I noticed on the control page of the website that others cannot see...that Australia is now on board.  Now, if we could only get the penguins in Antartica on our team....we will truly have the entire world pulling for Mark.
     I will update more tomorrow.  I think our entire family is tired and Mark is so much more comfortable now that he has had a few doses of morphine.

     Mark hasn't been feeling well since Saturday.  Kept thinking he would get better and I could post something about a wild time he had over the weekend but that never materialized.  He was really back to his old self until very late Friday night when he came home after being out with Paul and friends.  Ever since then, he hasn't felt well, has been nauseated, lethargic and not eating well at all.
    He didn't feel like going out with friends Saturday night but did want to go to the graduation celebration for Butch's son.  I know last week he had visions of having a really good time at Chris's party, but by Sunday afternoon it was all he could do to get dressed and go for a short while.  It was really nice to meet Butch's family and it gave Don and I the chance to thank them for taking Butch away from his family so many times in the past couple of months. Don and I were not surprised how friendly and caring Butch's family was.  They are really good people.  Butch could tell immediately that Mark wasn't feeling well and gave Mark a pep talk the way only Butch can.
    We did call the oncologist on call Sunday and the person who answered the call did not know Mark but suggested that we go to Barnes ER and have him checked out.  Mark didn't want to spend 8 hours in the ER only to be sent home no different than what he was.  Monday Mark felt a little better but was still lethargic.  We think the Sutent is probably doing a number on him. So, early this morning before the birds even started singing, I put a call into Colleen at Dr. Tan's office and hopefully we can get some answers.  We gave Mark the time he wanted to work through this himself but we don't want anything preventing him from having his surgery next week.  John came over to see Mark and agreed with Mark that he was tired and probably overdid it last week.  Kris Heyde called (she always seems to know when to show up or call) and suggested that the nurse come out and draw blood.  So...we are hoping that can be done today.
     I finally got the beautfiful pictures that John, Tabby and Mark had done for my birthday and have them posted under "New Pictures". Please look at my good looking kids.
     Hopefully Mark will be feeling better today.  I had toyed with the idea that I would be working this week but the way Mark is feeling now, I am no longer planning that.
     If you have a chance...continue to leave messages on the message board.  I know when Mark is homebound like he has been the past few days, he looks at the messages.  And if he doesn't look at them, Don and I certainly do....it reminds us that we are not in this alone.

Here is a little story I didn't even tell John or Tabby today:
     When this nightmare started five months ago, a concern Don and I had was how our grandsons, especially Michael, would comprehend what was happening in our family.  That is one reason why John "helped" Michael buzz Mark's hair.  We did not need to concern ourselves I learned today.  I had taken the babies shopping with me today.  Mark has lost a lot of weight and is needing some clothes to wear out and about.  I told Michael that we were going to buy Mark some shorts.  Michael briefly stepped away from me and I immediately went after him (he and I had just had a "talk" about staying with Granny) but he already had in his hand what he wanted...a winter hat.  I don't know why this hat was still out on the shelves but when I asked Michael why he had it, he said "For Uncle Mark to keep his head warm."  I told him Uncle Mark had hats at home and he probably did need to wear one because he didn't have any hair.  I then said "Isn't that funny?"  Michael said "I don't care."  Pretty cool.  He doesn't care if his uncle looks different or doesn't have the energy he used to.....he still loves him and wants his head to stay warm.  Some things adults worry about can be easily explained and better understood by a four year old who loves his uncle...we should have gone to Michael long ago to grasp a better understanding of what has been happening.
     I have had a number of people ask me how work was.  I did work the other night and I was so excited I was ready to go two hours early.  There have been some staffing and management changes and when I got to work I didn't know the nurses I was relieving in our observation unit.  I work on a division/observation unit for plastic surgery and head-neck patients.  At times we get off service patients on our floor...but rarely in the unit.  I had two patients...one was one of our standard patients and the other was a nice middle-aged person who had something very very very similar happening to him that happened to Mark in January.  I did pretty well throughout the night but by morning I was emotionally spent.  I will try again next week.  If I am to take care of someone with abdominal cancer....then it should be my son. Grandma believes God had me assigned to that patient...maybe she was right.
   Mark is really doing well this week.  He is eating more and will be in good shape for his surgery on the 29th.  He has left each evening to spend time with friends. Yesterday he played golf with Tim Watkins and although I believe Mark feels his game isn't back to where he wants it, I know he enjoys being out on the course and out with Tim.
   We can't decide if Mark's hair is coming in blonde or white.  Sutent is supposed to lighten or take the color out of hair..one of the side effects.  At any rate...I haven't seen Mark with blonde hair since he sprayed hair lightener on his head at the beach when he was a real little guy.  I am hoping that he lets it grow out until after surgery so we can tell for sure.  I know Mary Biehl will take care of changing the color if he wants.  If it is white, then maybe he can fill in for Anderson Cooper on CNN.....Mark sure has a lot of opinions on current events and probably would be a cinch for the job.

     Dr. Fleshman has scheduled surgery for Mark for Tuesday, May 29th.  He estimates Mark to be in the hospital 7-10days and we are hoping to have him out for that Cardinal game.  I am going back to work this week (tomorrow in fact) and Mark's job is to eat, build himself up and get ready for surgery.  No golf for six weeks after surgery and no chemo until one month after surgery....so hopefully Mark's appetite will return and he will continue to progress towards building his energy tolerance.  The surgery is to debulk the tumor, strip the peritoneal lining and possible bowel resections...all dependent upon what Dr. Fleshman finds when he gets in there. He cannot have the surgery any sooner because it has to be at least one month after chemo or he will not heal properly.
  It has been real interesting noting from where people are accessing Mark's website. In the past two weeks, there have been "hits" from England, Germany, Uganda, Kenya, China, Brazil, Russia, Saudi Arabia, Switzerland and Canada.  Except for Antartica and Australia...we have people praying for Mark on every continent.
   Mark did indeed give me the Mother's Day present I wanted...he went golfing. Sandy Chytla took him to Annbriar and said Mark did really well but started to get tired after the ninth hole.  John and Tabby and our babies went to church then out to lunch with Dave, Linda, Dave, Rachel and John and Tabby's good friends Bob and Lynn.  Then in the afternoon John, Tabby and the babies brought me a beautiful plant.  It was the best Mother's Day ever.
   Last week for my birthday I got the best present ever.  Tabitha arranged for John, Mark and the babies to have portraits done.  Please come over to our house and see my beautiful pictures.  John is going to scan one of them so I can post them on the web.  Don and I have the most beautiful children.  I have wanted pictures of my 3 kids and 2 babies for the longest time...and it wasn't until last week that Mark was well enough to have them done. 
   Don and I have been busying ourselves with planing flowers, weeding out bushes, and trying to make our yard rival Shaw's Gardens.  It has been very good therapy for us and we enjoy working on this together.
   So, hopefully we will have a mini-break and get back to our normal lives this week.  I am excited to get back to work even if it is only for two weeks.  My boss already knows that I probably won't be in during June...I have someone very important to take care of at home during that time.

    Thanks to everyone who has prayed and supported us during the past five months.  We will never be able to convey how our hearts feel towards the people pulling for us.  Please hang in there with us through the next phase of Mark's treatment.

     Everyday Mark is getting stronger. He is trying to eat more but still having a lot of gastric problems. I am still holding out hope that he will have enough energy and play a round of golf in honor of Mother's Day.  I think starting Wednesday of this week I began seeing a lot of our "old Mark" and found him even venturing outside of the house.  He still tires very easy but is trying hard.
     Beginning soon, John will be posting messages on this blog.  I don't ever expect to see Mark leave anything but I try to include what I think he would want people to know.  Many of you who know me well have learned to "read between the lines".  The past couple of days have been very very good and as I read earlier posts I realize that I never really comment how on truly bad some days are. I am so thankful for this week.
    Don has decided to be the last man standing who has never worked with a computer. He actually does not even know how to turn it off or on....so he will not be posting his own messages.  I feel that because he does not personally add his comments, that sometimes he is forgotten in this nightmare.  Donnie goes to work everyday...never knowing when he comes home what news Mark might have.  Up until this week, he has come home everyday with something for Mark..usually a slurpee.  Mark and I noticed last week that Don has more grey hair and the stress of all of this has been very hard on him.  Mark, however, is his little buddy and he has been there for Mark and the rest of us all the way. 
    I am hoping that we find out when Mark is to have surgery when we see Dr. Fleshman on Monday.  If he does not have surgery next week.....I am going to go back to work.  I don't think Mark needs me as much as he did a week ago and it will be nice to be normal for awhile.  I am also hoping if he doesn't have surgery that he can take a mini trip somewhere...we will see.
    Thank you to everyone for the birthday wishes.  I received a lot of phone calls, emails from my "other kids"....the ones Don and I could never claim on our taxes...beautiful flowers from Mandy....and most of all....absolutely fantastic portraits of our John, Tabby, Mark, Michael and Danny.  Tabitha I know made all the arrangements to get these pictures done.  I am hoping to scan one or two and put them on the website this weekend so everyone can see our beautiful family.  The afternoon of my birthday Michael and I went to Toys R Us to buy Granny a birthday present and also get decorations (Danny was napping).  Granny got super heroes action figures, some kind of thing for the action heroes to play on and Shrek pez dispensers.  Michael also picked out balloons..Elmo, Batman, Spiderman and Superman.  It was just what I wanted.
     I hope that everyone has a wonderful Mother's Day and look for a posting on Monday as to what Dr. Fleshman has decided.  Keep Mark in your thoughts and prayers...you all are doing a wonderful job.

This morning as I read through the guestbook message board, I noticed that someone found this site through "CNN blog".  Now, there have been several different entries into how people found this site...lunch with Queen Elizabeth by my brother.....the Savage Love Column of the Riverfront Times...our friends and family have such senses of humor.  But, the CNN blog..something told me that was true.  So, I spent a little time and found that it was true.  There is a story on the CNN page about an 18 year old named Miles who has rhabodymyosarcom (the same monster that took Shelley) and it could have easily been written about Mark.  Everything this young man writes is something I have heard Mark say.  Then, in the blog, I notice:

Just when I thought the week was going great...couldn't believe it could get better. When Mark had his scan Monday the family made the decision that we didn't want to know about the scan...we just didn't want to think about it nor have the stress.  We told that to Dr. Tan's nurse...but this afternoon she called because  Dr. Tan wanted us to know that the scan was very good...significant decrease in disease and ascites and that "this is the best time for surgery".  We have been waiting for this news for four months.  Mark is feeling really well.  He even drove to his store in Fairview Heights..the first time he has been there since the day after Christmas.  His scan showed some free air in the mediastinum..nothing to be overly concerned about as long as he isn't having trouble breathing..which he isn't.  I know Dr. Tan thinks it was due to chemo....but we all know it was really due to the support of his family/friends at Golf Discount and the great support shown to him by his friends at the Volleyball Tournament.  Deny that..GHP!!!

   Mark is having a really good week. He is actually eating really well!!!  I think he ate more yesterday than he has in four months.
   I was going to spend the day catching up on cleaning, etc. but it is much too nice out this morning.  Mark is planning to get up early and get out of the house for the day..not sure what he has planned but it will sure be nice seeing him drive off in his car.  
   We are still getting emails from a lot of people from the volleyball tournament.  Becky (Nick's wife) Rothe sent a nice email yesterday as did Nicki Horr.  We still haven't come down from the fun.
   It is nice to take a couple days off...and nice to report that Mark is feeling pretty good.  I hope he gets out and plays golf this week.

Mark had his scan today and while he was getting his scan I went to Dr. Tan's office.  Mark is not taking ANY chemo this week...pills or injections.....and as far as I could understand he won't have any more chemo until after his surgery.  Dr. Tan wants him to have surgery as soon as Dr. Fleshman feels it can be done.  We see Dr. Fleshman on Monday so the rest of the week hopefully will be uneventful.  Tom Kaesberg stopped by with Julie when we got home and then this evening Danny and Michael came over to see their Uncle Mark and eat snow cones.  Another wonderful day...what a blessing the past couple of days have been.  Mark is hoping that he can get a few rounds of golf in and get his nutrition up...so I hope to report great golf scores soon!!!!

Check out the Volleyball Tournament page....pictures are up!!  If you have pictures from this event, please email them to Barba21885@aol.com
   I really thought that Mark would be exhausted Sunday following the volleyball tournament...but he actually did pretty well.  I am the one that was exhausted and slept the day away!!!
   We have heard from several people who were at the tournament and EVERYONE had a great day.  Tom did such a good job and what a friend to take on such a project.
    This week may be a little easier but I am through trying to predict how weeks go.  Tomorrow Mark has a CT scan and we are not going to worry too much about it...no matter what it shows, Mark still has a long way to go as far as getting rid of the DSRCT monster....he still needs surgery, radiation and possibly more chemo.  This week Mark is not taking any chemo as far as we know...and we are just going to try and enjoy the warmth of support we have received from the Golf Tournament and the Volleyball Tournament.....those hugs we got do wonders.
    I think I may even get a little more sleep. Mark is not requiring as much medication and right now is off IVs.  Mike Mahler said he was going to try and come over and hang out with Mark...they may stay up all night watching movies.  There may be one problem with Mike coming over...Mark is a Craig Ferguson fan and Mike is a Conan fan.  It is amazing how these Panthers of 1999 stick with each other when needed.,.like they made a secret pact years ago.  Coach Heyde did a good job on them.
    I hope everyone enjoys the pictures from the tournament.  I think I did a better job on them than I did on the golf tournament...I think I have this website about figured out.
    A very good weekend thanks to Tom and the rest of Mark's friends.  Thanks so much.

What a really fun day.  The volleyball tournament / mini Mehlville reunion was outstanding. I don't think anyone imagined it to be so much fun.  Mark tolerated being outside for the first time for any length of time since the golf tournament.  No one wanted the day to end and in the true spirit of our Mehlville Panthers...the fun lasted a little longer when several friends came over to the house to watch the fight on TV.  We will see how long Mark sleeps in the morning...but perhaps for the only the second time in four months, Mark needed no help in falling asleep.  Thanks to St. Louis Volleyball and all the work Tom Kaesberg and Julie Walsh did to make this such a success.

     All the medical attention Mark has received through chemotherapy, tests, and superior care by the physicians and nurses at Barnes-Jewish Hospital cannot do what Mark's friends are able to accomplish:  make him smile, make him feel better, and give him a goal to get moving again.
     Those of you who visited Mark this week or have been following this website blog, know that the past two weeks have been hard for Mark.  All it took was a few hours before today's volleyball tournament, and his demeanor and energy level have completely changed.  Butch stopped by yesterday evening as well as Lisa and Jared....just the visits from these good people and knowing that he would be seeing more of his friends today....he is ready to roll. Hopefully, his energy level will hold out throughout the day.
     Don and I are excited about the tournament as well.  Primarily because it makes Mark smile but also because we know we will be surrounded by love and support.  I look forward to seeing many people and especially talking with my good friend, Teri Clemens (try Googling HER!!!).
    If you weren't planning on attending and have the time...please go to the Stratford Inn in Fenton...across from the Chrysler plant.  Don, Mark and I will be really glad to see you.

Mark had bloodwork done yesterday and we found out what we suspected...that Mark's platelet count and white count are low.  He was started on antibiotics, gave himself his Neulasta injection and is tired of taking all the pills he is on.  Hopefully, he will start eating more soon and not need the supplements he is taking.

He is still awake but much better tonight.  Grandma came out last night and is helping out so that I can sleep in the morning and not worry about Mark.  She has a knack for getting him moving some and I think it is easier for Mark knowing that his counts are down.  He knows now why he isn't feeling that great.

Tom Kaesberg called to say his grandfather died.  Poor Tom has been working so hard on the volleyball tournament. His grandfather's funeral will be Saturday.  Tom is going to call tomorrow and let me know what help he may need so if you think you might be able to help out...please call me at 894-9066 or 401-1810.  Mark is looking forward to the tournament and we all appreciate Tom's efforts.  Don't worry about waking me up...Grandma Joyce is here.

We miss our babies coming over but with Mark's counts low, they can't be around him.  I may try and go over to their house for a while tomorrow so I can get my kisses in.

This evening seems to be going much better. Sandy came yesterday and put in a new port line.  Grandma came to stay and Tim Watkins and his daughter Allison came over this evening for a visit. Mark really enjoyed that and we discussed how Tim will have his hands full with Allison...she is so pretty.

Don's alarm will be going off soon and that usually means Mark is ready to go to sleep.  With my husband giving me breaks in the evening and my mom here....I feel more rested.  Today will be a good day, I can just feel it.

     Another 4am and I hear Don's alarm going off and Mark still isn't asleep.  I know he is tired but is very restless...I think maybe it is his sleeping pill.  Need to make some kind of changes tonight or we both are going to wear out.  The nurse is coming at 1030 so there will be little time to sleep again once he falls asleep...that's how our days and nights go right now.  Sometimes I stay awake because he sick...right now I don't sleep until he does because I am afraid he will fall or something.  Poor Don tries to sleep through the night and goes to work early every morning but he can hear when Mark is having trouble with his belly,etc.  We just don't rest unless Mark is resting.  I don't think we have eaten at the same time, in the same place for awhile.  Poor Don has been coming home, cooking dinner and picking up the messes I have made during the day....then spends his time with Mark.  Don is a good guy.
     He seems somewhat stronger and is eating a little.  Took him a long time to decide what to eat last night and after Don and I made numerous suggestions...Mark decided he wanted cauliflower and Honey Nut Cheerios...neither which I had.  We were watching American Idol (actually he had it on so I could watch it) when he came up with this wonderful combination....and I asked him if I could go to the store after American Idol.  He said "Sure, Mom, I haven't eaten in four months so I guess I can wait another 20 minutesl" Needless to say, I left and got him cauliflower and HoneyNut Cheerios.  I swear Don and I didn't even come close to thinking that may be what he wanted to try.
     Kris Heyde came by with lunch and it was nice spending time with her.  Mark was semi-awake but I am sure he listened to us chatting in the kitchen.  Kris always seems to know when one of us needs a pick me up and this isn't the first time she has shown up when I needed someone to. Everyday there seems to be an angel and Kris was surely Wednesdays.
     After all my ranting and raving at the hospital and all the faxing I did....we got a call that one of Mark's chemo drugs that had been denied by GHP was going to be covered. 
     I have had a lot of people either call or tell me that they like the new website and check it everyday for updates.  Don and I really appreciate it and I know Mark loves the comments on the guestbook.  Thanks to all who check daily and who leave messages.

Someone tell me how to get Mark to sleep before 4am!!!  Dr. Tan's office called this morning and tomorrow the visiting nurse will come and draw blood.  Mark is still getting IV fluids but has more problems with secretions than with nausea at this point.  I asked about a scopolamine patch and they are calling in a prescription for this...hopefully this will help

The plan as it stands now is that Mark will have a CT scan on either May7th or May 10th and see the surgeon on May 14th.  He will review the scan and decide if Mark should have another course of chemo, have radiation first, or schedule the surgery.  So, soon we will know the next step.  If he has chemo...it will be on the 16th and Mark wants to have it inpatient this time.  He was so sick those first few days after this one and he can get stronger and through the IV medications to help him.

Mark is really looking forward to the volleyball tournament. It really is going to be fun and Mark is looking forward to seeing all of his family, friends and supporters there.

It is early in the day.....but hopefully Mark will continue to increase his strength and be feeling better today.  He is one awesome person....never complains, worries only about his friends, and is a fighter without thinking for a second that we are not going to beat this.  Don and I are so proud of him.

   It was a long quiet day.  Mark was able to keep some noodles and chicken in his system last night but continues to fight the nausea again today.  He is a tiny bit better each day as far as his energy. He is supposed to have his blood drawn at Siteman tomorrow but there is no way I am taking him downtown.  We will have to call in tomorrow morning and make arrangements for the home health nurse to come and draw it.  At least he still has his port accessed and won't have to endure a needle stick.
    Father Edwin Albers stopped by last evening as well as Jim and Donna Schumann.  Donna is Executive Director of the South County Chamber of Commerce and is hoping to have a special activity for Mark in the beginning of June.  Mark smiles whenever he thinks about it but I won't spill the beans here....you will have to call him or come see him and ask him personally.  I do hope Donna is able to swing it....it would be so cool for Mark.  Tom Ludwig also came by....I can never really remember (nor care) if Tom was John's friend first....or Mark's...doesn't really matter.  Tom is a great friend and a new daddy....check out the picture of baby Ellie on the Mark's Friends page.
    Then, around 9:45 Mark's Aunt Katie drove out to see him and just chat.  Crazy girl had to get up early the next day to go to work but she wanted to have Mark to herself and sit out on the veranda with me.  We were really glad to see her and I appreciate her so much.
    It was a quiet, uneventful day......and we should be happy for just that.